Recently, a new doctor, over the telephone, without ever having seen me, and whist making out a prescription for Prednisolone for which I had requested, added to that prescription Alendronic Acid. The detail accompanying the prescription told me to take each 70mg dose one each week.
I have been treated for PMR for the past 3 years, currently on 6mg, reducing very slowly as I can down to 5mg, my next target.
Can anyone offer any suggestions as to what considerations needs to be thought about before I begin this medication. I do not, as far as I am aware, ever suffered from osteoporosis, and there has not been any osteoporosis in my family.
On checking with my regular doctor once again per telephone, she advised me to take it, although she herself had not ever in the past thought to prescribe this medication for me. I ask if tests I could take that would indicate the need for this medication and she said "NO".
I consider myself fairly fit, I am 74 years of age, I weigh 8 1/2 stone. and am very careful with diet, although, I have found it difficult to take calcium supliments, having had an allergic reaction. Thank you, anyone!
There is a test and it is called a Dexa Scan and costs the NHS no more than about £24 per person.
I would not take any medication for bone loss until I had the test.
Also look on the National Osteoporosis website and read up on the alternative biophosonates if you do need to tkae on.
Calcium supplements which I took because I was given them cause me problems. Once stopped, no more problem. Sometimes the belts and braces attitude causes more problems than they were meant not to cause.
Hi, I have PMR was diagnosed November last and started on 20mg pred. First appointment with Consultant Rheumy in March, was in and out in less than 10 mins. He prescribed A Acd. I enquired about a Dexa Scan (it measures your bone density, I think) he said "further down the line". I had appt with my own gp following day and told her I would not be taking A Acid. I have no joint problems, nothing like that runs in my family, so I do understand. Mine choice is a personal one. I won't be changing my mind. Good luck on your journey. Regards Pat
Mrs Mac I was thinking there were two of you. I don't know how or why I replied to a post so old. I will put it down to pred fog lol
I had a DEXA scan which was 'normal' last year. But I changed my GP and my new GP, without even asking me about my calcium and D3 intake (I occasionally take some tablet) or the DEXA scan results 12 months previously, prescribed alendronic acid which I refused to take. I said, my scan was normal, I am drinking a pint of milk a day, I sit in the sun and take exercise, and am only on 7mg of prednisolone. So he sent me for another DEXA scan. It was normal. If he had had his way I would be on alendronic acid even though I didn't need it. Tiresome nincompoop!
Hello mrs Mac, your Dr is wrong. She should order a dexa scan for you, firstly that will determine the density of your bones and if they require extra medication to harden them up, and simply if you have been on prednisolone for 3 years it would be prudent to give you a dexa scan anyway.
i was prescribed AA, I was only 52 years old and I stupidly took this drug for 11 months until I read a thread on this forum that enlightened me to all the matters of this drug. I immediately stopped taking it and when I spoke with my rheumatologist about it, he said that he doesn't prescribe the drug to any of his patients below 75 years old.
i personally will only take this drug if it is proved I require it and the only way that can be proved is by a dexa scan, it's as simple as that so I don't understand what their issue is. It's quite clearly much easier for them to simply sign a prescription for AA than it is to book you in for a dexa scan!!
stand your ground. All the best, christina
What needs to be said has already been said - what an ignoramus not to admit the existence of dexascans!
And NO - NOT further down the line: the first dexascan should be done at the latest after about 3 months of higher dose pred to provide a baseline to compare later scans and it is generally accepted that the most loss of bone density will happen in the first few months of pred.
I had a dexascan done about 6 weeks into pred 6 years ago. It was normal, no need for anything more than calcium supplements. I had a second one done a couple of years ago, after about 4 years of pred - as far as can be told nothing has changed. The readings were, to all intents and purposes, the same as the previous one. Had the GP had their way I'd have been on alendronic acid for no reason. I haven't needed it. Only about half of patients in pred have any problems - so why give them all a drug with some fairly unpleasant side effects?In the UK it is not that difficult to have a dexascan done privately - and it costs about £55.
The British Rheumatological Society guidelines on PMR state:
Individuals with high fracture risk, e.g. aged => 65 years or prior fragility fracture
Bisphosphonate with calcium and vitamin D supplementation
DEXA not required
I think a lot of rheumatologists follow this blindly as part of a tick off list. If you are sixty five or over you are prescribed AA by some rheumies.
Interesting discussion. The two concerns my rheumy mentioned during my first visit were diabetes and bone loss. He explained that I would be on heavy doses of pred for over a year. He wanted me on large calcium supplements and vitamin D plus reduce carbs and sugar immediately. My first dexa scan showed slight bone loss when compared to a baseline one done 4 years before. He will do another in 6 months to see where I am. My teeth look good so far. I also not allowed in the sun at all...great risk for skin cancer when on pred. I cannot really tell what is a problem with extra calcium or a problem with high doses of pred but I trying to live with it all!! Take good care, Ann11195
I had just turned 60 and was prescribed A Acid by Consultant Rheumy - I told my then gp I was not taking it and also I was taking full responsibilty for my decision.
WOW, and thank you all so much for those replies, that has pointed me in the right direction, I will arrange for that scan privately, and then carefully take it from there.
Oh, and by the way, there is another subsciber with a similar name, i.e. 'Mrs.Mac',
Many thanks once again and I will post detail of how I get on.
Ann
Your GP can prescribe Fact0r 60, total sun block. I used it all the time I was on pred.
You need some sun, just don't sit in it when it is at its highest level and never for more than 20 minutes.
I stand amazed at the bad doctoring from the so-called specialists. First rheumy I saw took an Xray of my knees, did not exam me and said: you have titled kneecaps and tight IT bands, go to physical therapy. He had already screwed up on meds for osteporosi for me. I got an osteonecrotic spot in my jaw and did nothing to help me. I went to a teaching hospital to see a man my daughter-in-law heard when she was a dental intern at Children's Hospital in DC. He said yes the drug caused the spot and you need an antibiotic and special mouthwash. He monitored my case and the pain went away and nothing else bad so far has happened.
Of the titled kneecaps diagnosis, my PT people said that is no diagnosis--everyone has tight IT bands. You need a smarter rheumatologist. Too bad I listened to my GP and went to the bad rheumy. She convinced it would take too long to get an appointment with the best rheumy at a teaching hospital which is where my third rheumy practices.
I think everyone needs a course in how to navigate the medical system when you get a hard to diagnose ailment.
New guidelines om PMR, will be issued either later this year or early next year and they have had input from patient representatives.
They have been done internationally, through EULAR and ARC.
The same process for GCA guidelines will start early next year.
gosh, I have never heard this about sun and pred. I am often in the sun (I swim) and don't worry too much about it other than regular sunscreen SPF 15. (My Vit D levels are great which is unusual where I live. (Michigan)
Is there some heightened sensitivity with Prednisone?
MrsMAC, I arranged a private DEXA when shortly following diagnosis both my rheumy and GP refused one, saying that there was a 12-month waiting list at the time anyway! The scan was normal.
When I requested a repeat scan two years into treatment, this time it was accepted and the appointment came through very quickly - apparently there had been improvements in the set-up at the hospital. This scan showed just the tiniest reduction in bone density just into the osteopenia range but not requiring treatment. This result was in spite of a starting dose of 40mg Pred, and no calcium/Vit D supplement owing to a misunderstanding between my GP and rheumy. However, I did include plenty of calcium in my diet: yoghurt, milk, cheese and plenty of oily fish, and increased my walking (good weight-bearing exercise), and in the later stages joined both Tai Chi and Nordic walking classes.
The latest scan some time after coming off steroids actually showed improved bone density.
Precisely one of my questions regarding sun exposure & pred!
I was at the beach last weekend and missed totally covering my shoulder. It turned bright red but the odd thing was it didn't hurt. I have olive color skin and don't usually burn that easily.
My guess was the pred stopped the inflammation and that's why I felt no burn. But it worried me. I'm usually carful about covering up with sun block and clothing. My sister who has fair skin has had many instances of skin cancer. However she lives in south Texas. I live in the DC area.
Sorry i have no experience with this drug, but will be following your progress/decision...
I think to say "great risk for skin cancer" is rather OTT - a study done in Denmark I think showed there is an increased incidence of skin cancer in patients who have been on pred and I won't argue about that. However - correlation is not causation and it is also possible it is the underlying disease for which the pred was required that is playing a role.
There is a problem with "large calcium supplements" - eat all the dietary calcium you like, but supplements shouldn't exceed about 1200mg in total. For some reason it is processed differently and calcium from supplements may deposit in places you don't want it such as the artery walls. It is important to also supplement vit D otherwise the calcium won't be taken up properly and vit K2 (different from K1, so not a blood clotting problem) is also useful for the same reason.
When you stop to think about the time it takes in the end after a useless doctor a wait for the best person is worth acccepting!